If autism is depicted by Hollywood as Rain Man, then severe autism would be The Incredible Hulk.

Frustrated, out of control emotions, intense rages and hiding from a world that can’t begin to understand are all great analogies for severe autism.

Think of the most explosive terrible-twos tantrum – the full-on kicking, screaming and head-banging meltdown. Then transfer that to an 85kg young man – add a dose of hyperactivity and loud high-pitched squealing – and you’re starting to get the picture. It’s way too confronting for most people to deal with. Like a toddler, people with severe autism need constant vigilance and 24/7 monitoring. It is relentless.

Any diagnosis of autism can require a great effort by parents to assist their son or daughter to make the most of their lives, but severe autism presents challenges that require a daily effort bordering on superhuman, often with little reward and no end in sight. I guarantee that none of us had any idea of just how relentless it could be when we casually thought about ‘having a baby’.

Like most autism diagnoses, severe autism comes in many shapes and sizes. But drawing from experience and from those I know, here’s an insight into a really tough, challenging condition.

Five things that define severe autism

“Mummy, why can’t that boy talk?”

Not developing functional language often tips an autism diagnosis into the severe category. No language often means increased frustration, and moment-by-moment guesswork by carers. Many of our kids do not develop language, or even communicative intent, after years of intensive intervention. Imagine how empowering just a handful of words like ‘yes’, ‘no’ and ‘more’ could be?

“Can’t you control your child?”

Er, no actually. Severe autism brings forth every challenging behaviour imaginable, every day. Absconding, head banging, screaming and engaging in odd stims are part of daily life. Unlike Rain Man, generally no savant skills or special talents emerge.

“If only he would sit still and watch TV?”

Most people with severe autism are in constant motion, wandering, rocking, jumping up and down, twisting into unusual poses. Generally there is no sense of danger. I wonder how many families are trying to train their teen to watch TV, like we are?

“It’s true – sleep deprivation is a form of torture”

Waking and staying awake is nearly always part of the problem and a big issue for families, particularly when others are trying to sleep when a meltdown is happening off the Richter scale at 2am. It impacts every aspect of life from relationships to work. Continued lack of sleep leaves carers feeling alone and questioning their ability to cope.

“I’ll take you riding in my car”

Lots and lots and lots of times. People with severe autism tend to use car rides as entertainment and to settle themselves. We find ourselves driving up to six times every day, about an hour at a time, just to settle our teenage son.

Five things that just don’t work for those with severe autism

School is for kids who can sit still and pay attention

Kids with severe autism can’t. It’s not that they don’t want to – they can’t. For a child with challenging behaviours, the school must step up. There is a worrying trend for schools to ‘transition out’ teenagers with challenging behaviours rather than offer support. One local boy, who experienced a full-on ‘teenage outburst’, was banned from attending Special School for months and sent home to his mother until she could demonstrate his behaviour had improved. She was even asked to keep him home from an assembly in case he spoiled it. Seriously? That School gets ‘could do better’ on their report card. Let’s introduce a school system that builds incrementally on existing skills rather than trying to impose a national curriculum that has no meaning.

Waiting is impossible

Doctors’ visits, trips to hospital, lining up for hot chips – waiting is simply not on the agenda for someone with severe autism. We once went to a Christmas party for children with special needs, saw the queues, turned around and walked out.

Getting help shouldn’t mean relinquishing care

Please don’t make us give up our children to get help! More often than not, support from family and friends diminishes in direct proportion with the severity of the disorder, and parents are forced to seek help. Recently, a family whose son was experiencing very challenging behaviours was asked to relinquish him before they could access more support. They rightly refused and the boy ended up in a hospital ward for days while the parents fought the system. They won more help in the end. In an ideal world, crisis help without being forced to relinquish, should be a right not a battle. If ever there was a need for an urgent policy review, it’s this one.  

Fingers crossed for services for the "severe end of the spectrum"

There are no guarantees that services will accommodate those with severe autism. So often parents are excited to find a service that seems perfect only to discover it is restricted to mild or moderate autism. Services for non-verbal autistic kids are rare and ever rarer when challenging behaviours exist. It is a great concern for every family I know that while the NDIS may agree that these services are necessary, finding them may be near impossible. Equity in service provision could become a real issue. Yes, we know it’s not easy, but please consider us, too.

Family outings = disaster

Our motto ‘don’t set yourself up to fail’ arose from attempting to behave as a typical family. The family outing is the place where it’s all going to go wrong fast – sitting on a blanket with a picnic or going to a restaurant as a family generally results in disappointment and disaster. Most families end up taking their typical children out separately because: It’s. Just. Too. Hard.

Five things we hope brilliant minds are working on to help those with severe autism

Let’s discover the reason

It is tough to get those people who could make real change interested in severe autism. It’s confronting, it’s volatile and it definitely does not make great PR material. It is a completely different world to mild or moderate autism and needs a completely different direction. If you’re reading this, and you’re in a position to help, please help us by throwing every resource you have at solving this.

Let’s define the scope

How many people have a severe autism diagnosis? Locally, globally? The National Disability Insurance Scheme has been overwhelmed by the sheer number of cases of autism. Creating an accurate database will undoubtedly help future research.

Let’s build centres of excellence

It’s completely unacceptable to send someone with severe autism to a generalised service. They learn very differently to other people and need a specific approach. Centres of excellence addressing every facet – including education, behaviour, medical and physical needs – would take the guesswork out of which approach parents and carers should take. Referral to a centre of excellence at the point of diagnosis would ensure the best outcome possible and should continue through life.

Let’s create a Special Needs SES

When a community experiences an emergency situation, the State Emergency Services leap into action – providing a burst of support to help get people back on their feet. Here’s a big idea – let’s create a Special Needs SES and send an army of professionals around to help families through the very challenging times, rather than leave them to cope as best they can. Imagine if school, rather than sending children struggling with behaviour home, called on the Special Needs SES to send around a crack team who could assess the behaviour, establish a cause, and ensure the family had the best possible coping mechanisms in place.  

Let’s go all out to support families

We’ve coined the phrase ‘Ongoing Traumatic Stress Syndrome’ in our house. There is no ‘Post’ for families living with any form of severe disability – stress is a fact of life moment by moment. There is little my son can do for himself. He needs full support to go to the toilet, take a bath, clean his teeth and dress himself. Sometimes his sensory issues mean he cannot start eating without a full meltdown that involves head banging, aggression and injury to others. He can’t tell us if he’s feeling unwell. He has no concept of Christmas or birthdays. He rarely enjoys a full night’s sleep and this scenario is repeated throughout the severe autism community. Come on – let’s ramp up support for families.

Some final thoughts on hope…

No-one caring for someone with severe autism could do it without the promise of hope for the future.

I often say that if I was granted three wishes, I would only need one. My wish would be that the cause of autism is discovered, and it is something simple that can be simply treated. I hope we find ourselves saying “how did we miss that simple truth”?  

I hope in the meantime that recovery from disabling symptoms becomes a real option for all levels of autism from mild to severe.

I hope there is respect for families bearing the incredible emotional and financial brunt of caring for someone with severe autism and equity in the way services are distributed.  

And I truly hope that future generations can look forward to an age in which they are spared the crushing blow of watching a darling child spiral downwards into severe autism without hope for reasons or recovery.

Written by Desley Stewart,

Mum to Adam, 19 years